Sulodexide Possibly Benefits Chronic Tinnitus

Discussion in 'Research News' started by Emmi, Oct 6, 2016.

    1. Tezcatlipoca
      Question it

      Tezcatlipoca Member

      If any "Big Pharma" company had a drug that helps with tinnitus they would have marketed it as such decades ago, they aren't sitting on their patents.
       
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    2. Robin21

      Robin21 Member Benefactor

      Tinnitus Since:
      02/2009
      Cause of Tinnitus:
      Noise induced
      Sure, I try to stay as reasonable as possible but everything is about money. If it is simply not viable, there is not a single pharma company that would poke it with a ten foot stick.

      They play with risk/reward during research but their motif is first and foremost always be profit. They don't do it for anyone's well being. Of course I'm talking about the legal entities, there are a lot of dedicated scientist who really want to make a change.

      So following this logic it's quite logical they would let a trial die like this, that might undermine their x million dollar research investment.
       
    3. Robin21

      Robin21 Member Benefactor

      Tinnitus Since:
      02/2009
      Cause of Tinnitus:
      Noise induced
      They aren't (well, they actually have to until a new drug is cleared for the market), but they won't help these cheap potential remedies either. That would make their expensively researched, developed and tested future medicines redundant.

      A patent for a drug is granted for 20 years. It starts from the moment they file the documents for a new chemical compound. After that, the clock is ticking and it's usually takes years (at best 7-8 years) for a new drug to hit the market. So they usually have half the time to reap the financial rewards before the novel drug becomes free for all and any other company can produce a generic version of it.
       
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    4. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      Having patent protection is not always the sole underlying reason for the business decision. You're also simplifying the drug development / approval process considerably.

      This drug is already being sold in many countries for non-tinnitus related underlying conditions. Many of the countries that it is sold in do not offer near the protective rights of the patent holder as the US and EU. Clearance from the FDA and similar bodies in developed countries is equally as important to protecting distribution of a new drug to that market as a patent. However, as we know on this forum, clinical trials require significant resources. Generics are a risk, but still need to pass through an approval process by the FDA or similar regulatory body. In the case of a prescription being required, the doctor can also be a factor in determining if the patient should be prescribed the on-brand version or generic.
       
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    5. Robin21

      Robin21 Member Benefactor

      Tinnitus Since:
      02/2009
      Cause of Tinnitus:
      Noise induced
      Thanks for the clarification. Yes, I did simplify as I'm not an expert in the medical field, but with a little expertise in intellectual property. With a common sense it's obvious that it's always about profit, at least for the legal entities.

      Of course generic drugs are a risk for the innovator companies as they cut way below their prices. Maybe that's bad for the company but good for the patients as these drugs cost a fraction of the original. I'm also not aware how these things actually happen, but my guess is big pharma companies have huge lobbying activity in what is being prescribed.

      Brand drugs have a time window to milk the heck out of the market with a novel drug, as they can sell it for whatever they think of.

      About regulations and FDA, it's basically a shitshow at this point. The scandal with the new drug for Alzheimer's is a perfect example. It is a drug originally developed in China. What goes behind the closed doors of these regulatory boards is a mystery, but heavily tinted with politics, business, and corruption.
       
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    6. Ali.sy

      Ali.sy Member

      Location:
      Deutschland
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Headphones
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    7. Chasman

      Chasman Member

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      aging hearing loss + loud noise exposure
      I was in Mexico just before the pandemic hit and bought a couple boxes of Sulodexide just before I left. You don't need a prescription and it's super inexpensive (less than $10 for a box). It comes in blister pack of 50 small solid pills listed at 250 LRU (Lipid) or 25 mg.

      I had forgotten about them. I started taking them 3 days ago in the AM and I have to say, my tinnitus has been lower these last 3 days I should have waited longer to post but I'm moving (again) and didn't want to forget.

      The box says "Vessel Due F, Sulodexida Capsula 250 LRU Caja con 50 capsulas". It's distributed by AlphaSigma S.P.A. in Mexico City but on the back of the box it says it's made in Italy.
       
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    8. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      Nice. Can you do us all a favor and maybe keep a log rating your tinnitus (loudness, annoyance, etc) while on and off the drug? Maybe take it for a week straight, then take a couple weeks off, then take it again. It would be nice to see some actual data from someone using this... otherwise we end up with vague "I think it works" or "It doesn't work" which isn't really very meaningful.
       
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    9. kingsfan
      Mellow

      kingsfan Member Benefactor Hall of Fame

      Location:
      Southern California
      Tinnitus Since:
      9-17-20 / 10-20-20 / 3-31-21 / 5-23-21
      Cause of Tinnitus:
      turning everything up to 11
      Do you know if I would legally be able to take this across the US border if I drive down to Tijuana?
       
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    10. Keretz

      Keretz Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Concert
      Dear all,

      I have read Tinnitus Talk a lot and I write you for the first time because I have just bought capsules of Sulodexide. Fortunately, I am on holiday in Spain. It is very easy to get it here at a "low" cost (€13/$10). The brand I got is Aterina. The dosage available is 15 mg. There are 60 capsules in a box.

      FYI, my tinnitus appeared following a concert. So my condition is linked to a sound trauma. I have hearing loss from the 8 kHz as far as I remember.

      I took 2 capsules this morning. I will take two more capsules this evening with Melatonin.

      I will let you know.
       
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    11. buttercake

      buttercake Guest

      I found a few instances of Italian doctors on online forums suggesting Vessel (Sulodexide) as treatment attempt for idiopathic tinnitus.
       
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    12. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      If you are planning to take the drug for a while, can you keep a journal of your tinnitus each day you’re on the drug and/or off the drug. Rate things like loudness, annoyance, etc of the tinnitus. This will help members get a better gauge of the effectiveness of the drug.
       
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    13. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      Vessel is prescribed quite often in Italy when vascular issues are thought to be the cause of tinnitus. I tried it myself for a couple of months, with no effect; my tinnitus has no vascular origin though.
       
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    14. Keretz

      Keretz Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Concert
      Sure, I will keep a journal up to date. I will also check for the side effects...
       
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    15. Sveinp68

      Sveinp68 Member

      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Anxiety stress. Post Covid. Who knows
      Interesting. I will look into that. I live in Spain and will go out to my local drugstore ASAP.

      What is the recommended amount of Melatonin to be taken with Sulodexide?
       
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    16. Diesel

      Diesel Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      1-2019
      Cause of Tinnitus:
      20+ Years of Live Music, Motorcycles, and Power Tools
      Can you try it for a week without Melatonin and then with staggered mg of Melatonin (ie: 1 week with 5 mg, 10 mg, 15 mg? I'm not sure there's a documented amount, so there may be some trial.

      As I've asked from others, can you keep a journal of your tinnitus while on Sulodexide, with / without Melatonin, and when not on the drug? Track tinnitus loudness and annoyance with a rating.
       
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    17. Ehren M
      Nerdy

      Ehren M Member

      Location:
      USA
      Tinnitus Since:
      01/24/2021
      Cause of Tinnitus:
      acoustic trauma
      This is "citizen science" in action! Science conducted by the people, for the people. Although for this to be truly scientific and objective we need accuracy and more participants. I wish I could obtain the drug and partake. Thank you to all who do end up experimenting with this and reporting back.
       
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    18. kingsfan
      Mellow

      kingsfan Member Benefactor Hall of Fame

      Location:
      Southern California
      Tinnitus Since:
      9-17-20 / 10-20-20 / 3-31-21 / 5-23-21
      Cause of Tinnitus:
      turning everything up to 11
      I will eventually try this if other things on my list do not help. Keeping a log is difficult for me though as I'm very forgetful, which has gotten even worse since my tinnitus worsened.
       
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    19. Ali.sy

      Ali.sy Member

      Location:
      Deutschland
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Headphones
      I want to buy Sulodexide. I live in Germany. Where can I get it?
       
    20. Keretz

      Keretz Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Concert
      Hello. Just to let you know, Sulodexide has had no effect on me after 30 days of taking the capsules on a daily basis (neither bad effect nor good on my tinnitus). No side effects either. I have a journal up to date as discussed... Nothing interesting to share... But I will copy it if it makes sense...
       
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    21. Alexandras
      Balanced

      Alexandras Member

      Tinnitus Since:
      2020-07
      Cause of Tinnitus:
      SSHL
      Really sad. Would you try to add 3 mg Melatonin before the sleep as in the study?
       
    22. Keretz

      Keretz Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Concert
      Good point! I reproduced the study. I took the Melatonin as well...

      I think it cannot help tinnitus induced by hearing loss like me. It should be more effective for people impacted by blood pressure for instance.
       
    23. tinmandan
      No Mood

      tinmandan Member

      Tinnitus Since:
      5/12/18
      Cause of Tinnitus:
      Head trauma
      This is from Wikipedia, under uses for the drug.

      "Clinically, sulodexide is used for the prophylaxis and treatment of thromboembolic diseases; however, recent research has also demonstrated the beneficial effects of sulodexide in animal models of reperfusion injury and the treatment of diabetic nephropathy. In combination with Melatonin, sulodexide has been shown to be a viable treatment option for patients suffering from central or sensorineural tinnitus."

      Sounds like it's worth a try, also looks like there is no risk of interaction with other drugs, and also very minimal transient GI side effects.
       
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    24. Chasman

      Chasman Member

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      aging hearing loss + loud noise exposure
      I have been taking Sulodexide (aka Vessel Due F) that I bought in Mexico. I'm also taking Melatonin at night under my tongue.

      They DO help with my tinnitus. I'm back in the USA and running out of Sulodexide, so I have been looking around for some online source. I used to be in California so driving to TJ isn't a big deal, but now I'm in Hawaii so I'm looking for an online source.

      Long story short, I am 70, and I've been having a new incidence of joint pain in my hands, feet and one shoulder. Well, I just found out this is a possible side effect of Heparin (which Sulodexide basically seems to be in oral form). I imagine most of you are younger and the joint pain thing will not be an issue. I assumed it was arthritis.

      Anyway, I'm going to cold turkey my remaining month's stash of Sulodexide and see what happens. If the tinnitus comes back much worse, I'll have to decide. Worst case, put up with the joint pain and fly to Mexico and buy a ****load of the stuff. Best case, the tinnitus doesn't get any worse and the joint pain goes away.

      Anyway, here's some more data for you'all trying to deal with tinnitus. But the Sulodexide/Melatonin combo definitely has helped me a lot.
       
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    25. 2noist

      2noist Member

      Tinnitus Since:
      04/2015
      Thanks for the update. I hope to try Sulodexide.
       
    26. Alexandras
      Balanced

      Alexandras Member

      Tinnitus Since:
      2020-07
      Cause of Tinnitus:
      SSHL
      I got Sulodexide and Melatonin. I will try this protocol.
       
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    27. AmePerdue

      AmePerdue Member Benefactor

      Location:
      France
      Tinnitus Since:
      May 10, 2021
      Cause of Tinnitus:
      Unknown - Likely ear infection
      So I made the round trip to Spain and bought a box of Sulodexide (Aterina, 15 mg per capsule).

      I took 2 capsules per day over the past week, along with 3.8 mg of Melatonin in the evening for sleep. (I did not want to take Melatonin in the morning so as not to get sleepy during the day).

      So far the result is inconclusive. It may have an effect and I felt really good during the week overall, the best I've felt since my tinnitus onset back in May. Also it was the first week without any problems sleeping, which I really thought was impossible just 2 months ago. Nothing that can't be attributed to habituation however, which has slowly been kicking in over the past 2 months.

      My tinnitus already fluctuates a lot. I don't think in terms of "spikes" but rather "high" and "low" periods, half of the time being high and the other half low. This week the proportion was reduced to about 25% high and 75% low, so that was encouraging. Sadly, I wouldn't go as far as call it a definitive reduction in volume yet. I'm not saying there's no reduction, just that if there is, it is only a statistical improvement. No unmistakable suppression.

      I was confident I would have some effect on me because my tinnitus briefly takes a pulsatile aspect when transitioning between high and low periods, which I took it as a sign that it somehow reacts to changes in blood aspect / blood pressure. I will try not taking it the next week and see if that changes anything. After that I may try taking it again, this time raising the daily dose to match the trial dosage more closely.

      In short, I feel like it may help but it may be placebo effect. It's certainly not a magic pill and spikes are still there.
       
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    28. AmePerdue

      AmePerdue Member Benefactor

      Location:
      France
      Tinnitus Since:
      May 10, 2021
      Cause of Tinnitus:
      Unknown - Likely ear infection
      Update: After a 1 week pause, I've been taking Sulodexide again for the last 3 days. Tinnitus has been high the whole time regardless. I'm starting to think the respite I had during my first week with Sulodexide may have been a coincidence. (Part of my normal tinnitus cycle.)

      I'll try to double the dosage (to 2x30 mg + 6 mg melatonin) next week. At this point I'm doubtful it'll have any effect.
       
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    29. ploughna

      ploughna Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      motor racing and power tools
      I gave up on it after a month - I kept a careful log and saw no noticeable effect. Moral of the story for me is that if there was a drug that made a real difference, we'd all know about it by now. I've got a few leftover boxes of Sulodexide if anyone else wants to give it a try, but honestly I couldn't recommend it based on my experience.
       
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    30. marcjrf
      Angry

      marcjrf Member

      Location:
      Canada
      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Covid-19
      A question to folks that already bought it. I live in Canada, where this is not sold.
      I am about to travel to Germany, where this is not available either. However, it is widely available in plenty of other EU countries, which may make it easier for me to purchase it. If not for the prescription requirement.

      I saw someone saying in a different post that they were able to purchase it OTC in Spain. However, I called some pharmacies in Spain, and they mentioned that a prescription was required.

      Are there some countries that are more lax regarding Sulodexide prescriptions there?
      I can't get my doctor to prescribe something that is not even regulated here. At the same time, it would be hard for me to get a prescription with a random doctor abroad.
       
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